respite advice

[j.j]

hi
posted other day for first time and was heartened by replies thank you it was nice to hear from people who share one,s worries and concerns. we were struggling to cope with mams az and few people advised going back to social worker which i did and have been offered respite for two weeks! we are pleased because were led to believe a section was the road to take. but now our worries are how to handle getting someone who thinks they are fine into respite and what we may encounter along the way,

 

[linda a]

I need a rest

I have just looked on the site today after a few weeks away from the site and i feel guilty i have just booked my husband into a home for a few days,
Yes he thinks hes fine and he tells me its me thats not ok,
Hes pulling me down i work full time and we have a teanage daughter its been a very hard year i so want the house to myself to catch up on sleep not to have to set the alarm for 6am each morning so the carers can come in,oh!im not complaining about the help i have had since November but to hve the house to feel normal to not keep wondering what hes doing is he going out its cold oh i know you all know what im talking about its good to put it down,
all have to do now is TELL HIM!!!!!!!!!!!!!!!!

 

[Grannie G]

Good luck Linda. Please let us know how he receives the news. It`ll be my turn to ask for respite soon and any information will help.
Make the most of your `few days`. Enjoy them. Have a bit of `Linda Time`.
Love Sylvia

 

[alfjess]

Hi Linda
When I put Mum and Dad to respite for the first and only time I told them that we had booked and paid for a holiday for them, as a present from the family. Fortunately the home looked like an hotel, but I still couldn't take them, because, Mum was having major panic attacks about not wanting to go. The CPN, who is wonderful took them. Had to give Mum an extra seditive to calm her on arrival at the respite home. We were advised not to visit, but I did phone everyday and was told they were fine. At the end of the 2 weeks when we went to bring them home, I was very suprised at how relaxed they were, so much so that I am trying to arrange more respite and ultimately residential care.
Alfjess

 

[Nell]

hi
but now our worries are how to handle getting someone who thinks they are fine into respite and what we may encounter along the way,

I think you have to use subterfuge (read "little white lies"!!) in most cases! It depends how your Mum will react. . . .

The "going on a holiday" idea might work well; or you could try "I need a holiday" (if your Mum accepts that you do a lot for her . . .??). You could say you aren't well / too tired / too busy / too tied up with work (whatever) to give her the attention she deserves for a couple of weeks. She might be happier to go if she feels she is doing it for you. . .???

Someone on TP told their AD sufferer that the holiday had been paid for and you can't get a rebate!!!

Getting someone else to take her also sounds sensible - she may not "kick up a fuss" for those outside the family.

Good Luck!! Let us know how you get on. Nell

 

[alfjess]

respite

Hi All
So much for trying to arrange more respite for Mum and Dad.
I was told before Christmas that rolling respite would be arranged, but I had a meeting with our social worker this morning and she has been told by her team leader that no respite can be booked, because SS don't have the budget. Only emergency respite is available.
Doesn't look as though we can book any holidays this year
Does anyone know if SS can do this?
Sorry if I've hilacked this thread, maybe I should have started another
Alfjess

 

[jenniferpa]

I'm not sure how what category respite comes under, but I do know that if someone has an "assessed need" LAs are not allowed to use lack of fiunds as an excuse not to provide it, or alternatively, run some kind of waiting list. Help the aged has some info about this (although not specific to respite) See here
http://www.helptheaged.org.uk/en-gb...ProblemsWithFunding/as_fundprobs_200106_5.htm

I would call the AZ helpline and/or the help the aged helpline.

Edited to add:
Have a look at this
http://www.carersuk.org/Information/Helpwithcaring/Cutstoservices

On the face of it, they cannot do this without conducting another assessment.

 

[jenniferpa]

I been thinking about this (canceled respite) and it really irritates me, although obviously it's worse for you. One of 2 situations apply here. Either whoever issued the edict doesn't know the rules that thye are supposed to operate under, or, and I have to say I think this is more likely, it is a cynical attempt to put one over on their service users. Most/many carers are too tired/isolated/poor informed to effectively fight something like this, and the LA know this. If you make a fuss, I wouldn't be surprised if suddenly you'll be entitled to emergency respite care. In this case, "emergency" means "emergency - we'll get in to trouble about this". I'm not saying it's the social worker, because I really think most of them have more on their plate than they can managed anyway, but the managers.

Jennifer

 

[Skye]

Hi Jennifer

I think there's another problem here that you may not be aware of. Alfjess is in Scotland, and the set-up is slightly different.

The Scottish Executive has decreed free personal care for the over 65s, councils say they can't afford it, councils can't back down with Scottish Exec. elctions due in May!

As a result, there are a lot of disputes and test cases going on.

Alfjess, you should ring Alzheimer Scotland. They are fighting hard to make sure that people get the care thay have been promised.

Good luck,

 

[jenniferpa]

Why did I not know/notice that?? You're right - I'm sure the siutation is different, although I did see some stuff specific to Scotland when I was looking for those links -I'll see if I can find them again.

Jennifer

Edited to add: this is a quote from Carers Scotland (talking about carer's assessments)
http://www.ageconcernscotland.org.uk/pdf.pl?file=age/news/FS41s JAN2005.pdf
Local authorities are required to set out how they make decisions about whether or not to provide services. These are termed eligibility criteria. The needs identified in the assessments are compared against their eligibility criteria. If the needs of the person that you look after match these eligibility criteria, the local authority must provide services to meet their needs. You can obtain a copy of their eligibility criteria by phoning your local authority.

http://www.ageconcernscotland.org.uk/pdf.pl?file=age/news/FS41s JAN2005.pdf
Actually, from reading this, the same essentials seem to apply - if you've had a carer's assessment, they can't cut down on your support without doing another assessment (Section 7 seems the most relevant) Also Section 8 that included this

"Once your assessed needs have been compared with your local authority's eligibility criteria, your local authority social work department has a duty to meet your needs as soon as is reasonably practicable. Once an assessment has shown a need for services to be provided according to the local authority's eligibility criteria, a lack of financial resources is not a valid reason for the authority to fail to provide those services"

 

[alfjess]

cancelled respite

Hi All
Thanks for all your replies. I have just had a quick look at the links you've forwarded. I will print them off and study them in more detail.
I will certainly phone Alzheimers Scotland tomorrow. I have also decided to complain to SS, and copy the letter to head of SS for our area, my MP, MSP and local council representitive.
From what I have read, SS cannot refuse services, due to lack of funds.
Will keep you all posted on progress
Thanks again
Alfjess

 

[alfjess]

cancelled respite

Hi All
I phones Alzs Scotland helpline and the woman I spoke to had never heard of rolling respite, had never heard of xx amount of respite per year. Although very nice, not very helpful, she said "they were hearing about lack of services, finances all the time and if there was no money, there was no money, but had no constructive advice.
However, Sunday, I emailed my Counciller, my MSP, my MP, head of SS for the area. Maybe my letter wasn't good enough, but guess what? No replies.
My local counciller had a surgery to-night, which I couldn't attend, because it was at the time when I have to give dinner and medication to Mum and Dad and then try to get them washed and changed.
My Daughter went instead, explaining why I couldn't attend personally.
He said he had received my email, but there was not enough detail. Why didn't he email me back, asking for the details he required
He was very symphathetic, because his wife had cared for her mother, who had AD and said he would look into it and I can phone him anytime.
I am still awaiting replies from the others, I emailed.
I will keep you posted, re progress, if any!!
Alfjess

 

[Skye]

Hi Alfjess

What a rotten day you've had. I'm surprised you had such a poor response from Alzscot. I've never had to phone their helpline myself, but I know Chip has had support from them. Maybe you just got the wrong person. Worth another try?

It's disgusting that none of the people you emailed bothered to reply. You would think they could manage at least an acknowledgement.

Let's hope at least someone bothers to reply to you.

Love

 

[alfjess]

cancelled respite

Hi Skye
The person I spoke to at alzscot sounded quite old herself. I don't mean that in a derogatory way. I admire the volunteers who give their time to Ahlzheimers. Maybe she was just a little out of touch.
I will wait for a day or two to see if I get any results from our councillor, if not will try alzscot again.
Thanks, look after yourself
Alfjess